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  • Writer's pictureIona Stuart

Epilepsy & Me*

Happy Monday, everyone!

So, if you haven’t guessed from the title of this post, I have epilepsy – and I am perfectly aware that anyone reading this who knows me personally is likely thinking, ‘Yeah, no sh!t.’

I was officially diagnosed with epilepsy when I was 18, although the length of time I have actually been experiencing seizures is more questionable. When I was younger – I’m going to say around 14 – I passed out a lot, and no one really knew why.

At this point in my life, I also often had sleep paralysis, and due to this, when I started experiencing what I later went on to learn were nocturnal seizures, I thought that perhaps it was just the sleep paralysis experimenting with new ways of messing with me. But these new events were different, and they would leave me exhausted, sore, and nauseous. I would have a headache that lasted all day, sometimes bites at the back of my tongue or in my cheeks, and one day I awoke having cracked one of my molars. I once sprained my wrist after essentially punching my bedroom wall during one of these events, and often found that things had fallen off the shelf by my bed due to the mini earthquakes that I invoked.

Then my passing out happened more often and got more intense. It wasn’t until I started having tonic-clonic seizures, that were not during sleep, that I got my diagnosis – epilepsy secondary to multiple sclerosis (the MS diagnosis is one I’ve had since I was 14 – perhaps another reason as to why that age has become my go-to), and when going over my history with a specialist nurse, we began to realize how much of what I’d previously experienced had most likely been caused by undiagnosed epilepsy.

One of the thought processes that I have in my brain is this awful tendency to categorize those of us with epilepsy into what I call ‘Quiet’ and ‘Loud’ epileptics. To me, Quiet Epileptics are the people who you’d normally never know had epilepsy – they don’t really talk about it, it isn’t obvious from casual relationships, and they generally seem to be pretty successful at living life in general. Some of them can even drive.

The Loud Epileptics, by contrast, are those who you wouldn’t fail to notice had epilepsy – they talk about it openly, possibly make jokes, and the majority of people to come across them are very aware of their health condition (often through experience).

I am most certainly the latter. However, as I said previously, this is just some thought process that wanders around in my head, and I do also believe that it’s a sliding scale – maybe in 10 years, I’ll be a Quiet Epileptic, who knows?

*edited repost from original website

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